It was around the time medical authorities discovered that gatherings of CF patients put them at risk, bringing an end to summer camps for children with the disease and other group activities.As a result, Stagg didn’t meet others facing the same obstacles until she was about 20.“With the current infection control protocols, people with CF are forbidden from hanging out with one another, it’s very much frowned upon,” she says.
You'd hardly know I was ill if you were to look at me. It's an incurable, genetic disease, where sufferers have thick mucus clogging their lungs.
I go out with my friends, have a drink, travel, work, all the things everyone else does. Because of scarring from infection, a sufferer will either slowly suffocate - leaving their lungs unable to supply enough oxygen to the body - or their immune system loses the battle against infections. Should both parents have the gene, there is a one-in-four chance their child will have it.
The network will allow patients to share information about therapies, recipes and research in a Canadian context.
Relatives planning to have children and going through genetic testing for CF will be able to find one another, as well as parents of children struggling with the illness.“This is a quality of life initiative,” says Adamson.
Living with cystic fibrosis involves a need for regular treatment, much of which is focused on clearing the mucus from airways by coughing.